It’s that time of year again boys and girls, ladies and gentlemen. Next week is National Diabetes Week, and, starting Sunday, July 17, there’s tonnes of awareness to be done.
Diabetes Australia has a brief note about the upcoming event, and really doesn’t go any further into it. All that is definitely on for next week is the 2009 Walk to Cure Diabetes, run by JDRF.
Needless to say, the most important part of any awareness week is you. Get out there, talk to people about Diabetes, donate to JDRF or Diabetes Australia. And pray that, one day, a cure will be found.
I apologise forthwith for the lack of updating of this page, but my life, as Kate and Lance’s, has been filled to brimming with events and occurrences. My dearest nephew has been in horrible pain, and Kate is trying to cope on little sleep and a life almost devoted to D and PN.
Please, send your wishes on to them, and pray that relief will soon be at hand.
I want to reflect back on what has been a trying time for Kate and Lance. Their tireless work throughout this year to prove to doctors that PN can exist in a young child has resulting in help from many of you, for which I thank you all. I will shortly write a more detailed post, when I am not knee-deep in Carbon Nanotubes and trying to sort out plagiarising students.
We hope for a cure to come swiftly to aid all of us, and hope for the best for Kate and Lance.
I apologise profusely for my slackness in keeping the world updated with the progress of life with dearest Kate and Lance-a-lot, but I am troubled.
I’ve had significant issues in getting in contact, with only one short phonecall to Lance last month, and quickly catching Kate before she shot out the door yesterday. All I can tell you is that they are alive. Admittedly, though, Lance sounded in good spirits when I spoke with him
Meanwhile, there’s not a great deal I can tell you at this point from a diabetes perspective, but, there is another event close to my heart coming up soon:
Next week, May 11-17, is ME/CFS Awareness Week, and Dan and I plan to go along to the event organised in NSW, the Creative For A Second art tour.
A short post from me this morning… I was doing a little research yesterday, and stumbled across reference to this article:
Peripheral neuropathy in children with insulin dependent
diabetes mellitus
Fiçicioğlu C, Aydin A, Haktan M, Kiziltan M. Istanbul University Cerrahpa şa Faculty of Medicine.
Turk J Pediatr. 1994 Apr-Jun;36(2):97-104. (Link)
Peripheral somatic nerve function was studied in 38 unselected diabetic children and 31 age and sexmatched
healthy controls. Thirteen of the 38 diabetics had abnormal peripheral somatic nerve function tests (more than 3 SD below the mean for normals). Five of the 13 diabetic children had only abnormal peripheral nerve function (early asymptomatic neuropathy); seven of these 13 were abnormal both in neurologic examination and peripheral nerve function (asymptomatic neuropathy). Only one of the 13 patients showed neuropathic symptoms as well as an abnormal neurologic examination and impaired peripheral nerve function tests (symptomatic neuropathy). Both motor and sensory peripheral somatic nerve abnormalities were related to poor glycemic control (HbA1c) and duration of diabetes. Individual peripheral nerve tests correlated with HbA1c (fibular motor, p < 0.001; sural sensory, p < 0.05) or duration of diabetes (fibular motor, p < 0.01; median motor, p < 0.01). These results emphasize the importance of metabolic control and duration of diabetes in the pathogenesis of diabetic neuropathy. The findings suggest that peripheral neuropathy is common in young, insulin dependent diabetics. Being easy to conduct and sensitive, regular followup of nervous function test results may help to achieve good metabolic control and prevent diabetic complications.
In other words, of 38 randomly selected Type-1 diabetic children, ONE THIRD had some degree of Neuropathy. If your doctor doesn’t believe you that children can have it, print out this blog post and take it with you.
If anyone has access to the Turkish Journal of Paediatrics, I would be very greatful for a full version of this article, my University only has back to 2002.
I’m sorry I’ve been a little slack in keeping everyone up to date here on Kate and Lance’s blog, but I’ve been a little caught up in a few other things and have just found some time to sit down.
Things have not been going well for my sister-in-law in the north. She and Lance have been racing around trying to find an answer… any answer for Lance’s pain, which no doctor seems willing to believe is Peripheral Neuropathy. It’s at times like this we wish that modern medicine would stop thinking that every person fits into the categories written about in their textbooks.
Life is not identical for each of us. We are not exposed to exactly the same conditions as any other person every day, and even then our bodies respond to things differently. Allergies and intolerances are a prime example of this, and the varying degrees people may be afflicted with such debilitating illnesses as Diabetes, Chronic Fatigue Syndrome, and Fibromyalgia, as well as even things such as stress, anxiety, and depression, means that no doctor can just look in a book, point to a word and say “You have this!”.
It is imperative that Western Medicine remembers to think laterally and logically, combine all factors, and think about the exact conditions that the person is presenting with. If a child is crying every night and requiring 24 hour care to try to ease his pain; if a child can’t feel a pin being forced into his foot; if a child has continual burning sensations in his legs, then that child is probably not making it up and attention seeking.
As you can tell, I am seething from the news Kate has been telling me. It is disgraceful and disgusting some of the medical advice she has been given, including “just ignore it”, “it’s growing pains”, and “it can’t be neuropathy, he’s too young”.
It is good advice for all persons to remember, don’t just take your doctor’s word each time. Ask for a second opinion if you don’t believe what they’ve said is the case. Go to another doctor in your town, or, if you have to, travel. Find out who is the best person for your symptoms who might be able to help, and demand to see them. Do not just accept defeat and that you’ll just have to put up with anything.
Things have been a little less than positive in the -a-lot household recently, with a combination of the joys of Peripheral Neuropathy, visits to doctors, more tests than you can poke a stick at, and the odd extremely hot day (we do love our Australian summers, with temperatures regularly over 40 degC recently in Kate’s town – that’s 105 degF for you imperial folk), Kate and Lance have been caught up in the whirlwind of it all as the year begins, so I’m here for a quick update.
Unfortunately, there’s nothing really to update you on. Research has been quiet of late, with no real discoveries noted, but that’s not unusual for this time of year. In fact, there’s nothing really for me to say at all, except that Kate and Lance are both alive, I promise!
It’s hard to believe we’re in December, counting down the days until Christmas. We’ve all been running around madly, and I thought I’d just reassure everyone that this blog is quiet, but not forgotten!
Lance has had his 8th Birthday, and he’s been inundated with gifts and love. We expect he will emerge from his own Lego-land sometime in 2012. He wants to thank everyone who has been keeping him in their thoughts and prayers, especially since the diagnosis of peripheral neuropathy. Doctors and health-care specialists are looking into a range of ways of helping him, and Kate is doing everything in her power.
Talking of Kate, she’s just embarked on a new endeavour, and it’s keeping her mighty busy. Which is why I’m writing. Between her job and Lance, she hardly has 5 minutes to herself.
Not a great deal has been happening in the diabetes world, but great news for those in Africa, announced yesterday: Novo Nordisk is providing FREE insulin to 10,000 diabetes-affected children (Danish firm to give African children free insulin – Reuters).
I know you are all keeping both Lance and Kate in your thoughts, and they both appreciate it. Feel free to contact either of them on the email addresses hidden somewhere off on the side-bar there –>
Once again, World Diabetes Day has come (and gone, sorry for late posting), and it’s been celebrated around the world in many different ways. The theme this year was Diabetes in Children and Adolescents, making it particularly pertinent to this blog. As my darling nephew struggles with his own condition, it’s something that I always think about; or, as Helen Lovejoy cries out in The Simpsons, “Won’t somebody PLEASE think of the children?”. This year, Diabetes Australia worked with the JDRF and hosted a gala dinner (or, as my mother calls them, a galah), as well as hosting a group of sufferers as they climb Mt Kosciouszko.
Girls form a big heart and boys form a big foot to promote good cardiovascular and footcare in diabetics in India
I found that part of this year’s campaign was “bringing diabetes to light”, and a number of monuments around the world were lit up in blue. I’ve love to post them all here, but Kate might get annoyed with me, so I’ll direct you to the WDD Slideshow and the Flickr page for the photos, and end this post with my two favourite photos…
It feels weird, almost numb, to be writing this post, but my dear sister got in contact with me this morning and asked me to put something together.
When someone is diagnosed with any lifelong condition… you don’t think it can get any worse.
When someone is diagnosed with diabetes… you don’t think it can get any worse.
When a child is diagnosed with diabetes… you don’t think it can get any worse.
It just got worse.
It was almost ironic that I wrote yesterday and referred to severe foot ulceration as part of peripheral neuropathy. Lance-a-lot, today, officially received his diagnosis.
A quick revision… What is Peripheral Neuropathy?
I’m by no means an expert (though my trivial knowledge makes me a must for your next games night), so I browsed through the Wikipedia page (Peripheral neuropathy, Diabetic neuropathy). I have provided a summary below:
In general, the peripheral neuropathy is the damage of nerves in the peripheral nervous system:
In diabetics, distal axonopathies are caused by the neurons being affected by the metabolic process causing sugar fluctuations. Symptoms include loss of function causing numbness, weakness, heaviness, and gait imbalance and abnormalities; gain of functions such as pain, pins and needles, itching, cramps, and tremors; myalgia; and, in severe cases, the sensations such as burning which cannot be linked to any known problems. The loss of sensation can be severe, and a simple ‘prick’ test is often conducted.
The issue here that I want to make clear is that at no point is there any statement such as “this only affects…”
This means that Peripheral Neuropathies can affect any diabetic of any type at any time. Life is not written for “textbook cases”. There is no “you don’t have the right settings”.
What does this all mean?
Poor Lance-a-lot is now going to have to be careful. He has no sensation in his lower leg. Imagine not feeling your legs as you walked over broken glass? If he’s not careful, and I hate to drag it up again, but I think this point needs to be made, he could find himself facing this:
Ulcerated Toe
Finally…
One final point I want to make is that life, diabetes, and neuropathies are not a competition. I know that each condition is different. I know that some people have it far worse than others. I feel so terrible for each and every one of you. With World Diabetes Day this coming Friday, make a donation, and continue to try to make life better for everyone.
We’re all in this together.
Otherwise, we turn into The Four Yorkshiremen (and it’s over to Monty Python for the close…)
My name is Lance-a-lot, I'm eight years old and I live near Brisbane, Australia, with my mum, Kate, and my whippet, Chino. I also live with Type 1 Diabetes. I chose the name Lance-a-lot because I have had 8000 injections of insulin over the past six years so that I can stay alive. In July, 2008, I commenced insulin therapy via my Medtronic Minimed 722 Insulin Pump. I'm not a diabetic; I'm just an Aussie kid who happens to have Type 1 Diabetes.
This is Kate, my mum. She wants to tell the world my story, and teach others about what life is like for people with Type 1 Diabetes..
If you have any questions about type 1 diabetes,or would like us to write about a new diabetes innovation or even just for some friendly support.. please email my Mum and she'll reply as soon as she can!
Just click on our names to get our email addresses. You just have to change the (at) to @ and (dot) to an actual dot and you're set! We've done this to stop any spambots invading our inboxes.
We have had many practical experiences regarding the complications that go hand-in-hand with type 1 diabetes and we have learnt masses of information all by ourselves during the past six years. We are passionate about providing support to those who are touched with this condition,especially if you are feeling alone, or if you are in shock or grieving after a sudden diagnosis of your child. However, you MUST take the word of your doctor, first and foremost. I do not have a degree in Medical Science,nor am I an endocrinologist, a diabetes educator or a nurse. Therefore, If you or your child have any symptoms which concern you, or you feel that your child's health may be in danger, please, I implore of you, consult your health care professional immediately, OR call emergency services without delay. Untreated symptoms related to type 1 Diabetes can very quickly cause severe complications.
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Why not join our facebook cause-- Why did the insulin die in my pancreas?. It's a great way to show your support for people with type 1 diabetes. All money raised goes towards the Juvenile Diabetes Research Foundation (International).
